My projects: your advice would be appreciated.
 

Hi, I wondered if I could ask your help and advice about a couple of projects I am embarking on in fear, humility and trepidation.

I am an analytical psychologist in Australia training in Jungian Analysis, currently not working because of chemo-induced cognitive and physical fatigue, and trying to find my path back into my vocation and confidence.

First I want to write a book for the newly diagnosed about how to go about taking really good care of ourselves through the diagnosis, treatment and "come-what-may" of breast cancer. The mindset it takes. The skills we have to hone. Basically what we do that helps and how we use our minds and hearts and intuition and energy and friends and time etc to create a mindset that allows us to live effectively and well despite or even because of our cancer.

I have learnt so much from others, and would love to tap into your wisdom if you have things you would be prepared to share.

Also, I heard my oncologist speak today about the problem of non-compliance with treatment program which result in patients getting less than the 86% of the drug program that worked in trials, and that then leaves them much more likely to get metastatic cancer.

She said this is often because the patient sits and says how bad the fatigue, joint pain, hot flushes etc are, and how unbearable they are, until she has to say do you want me to cut your dose and reduce your side effects, even if it means you are more likely to get metastatic cancer. And she knows many other oncs just give in without asking the question. 56% of US patients do not get this minimum recommended dose.

I'd love to research this. My first thought is that I'd like to just find out what is happening from the patient point of view.

Then I wondered whether the communication is actually going awry between patient and onc.

Patients are taught that they should tell their oncs what symptoms they have so the onc knows the facts and can monitor them properly. Patients often also need to have someone in charge hear their anguish, pain, and distress. Patients may not be expecting oncs to say they will cut the dose, they may be expecting oncs to say,"It is a really hard process, and I respect how brave you are and how much strength you show in taking it on the chin."

I would love to know what you think, and if you think either of these could be of use. Any comments gratefully accepted

Re: My projects: your advice would be appreciated.
 

Hello Jessica,
I think a book or booklet about this could be very helpful. If you look on this site you will find that many people couldn't take the Aromatase inhibitors (tamoxifen, Femara) as long as proscribed due to side effects. I remember, myself, being told after weekly chemo for 4 months that I should consider a chemo break by the chemo doctor. I said no, I wanted to do it straight through. the very next week I had an anxiety attack when they wheeled in the chemo. The panic attack lasted about 20 minutes and I was able to take the chemo but I realized that however "strong" we try to be, we can sometimes be overwhelmed. However I do not think talking about this with the oncologist is productive and wastes his/her time. Better to bring this up to a support group or a cancer buddy (believe me having someone who has been through this to talk to is extremely important - this site is a perfect example) that is the best solution. These people know how they have coped and how to keep on through those difficult times. I think knowing what may help a person comply would be very helpful. As someone who is part of an active support group, I would like to know anything helpful to tell our cancer patients - ours are not just bc but mainly bc.
Go ahead with your idea. Not only will it help you but possibly many others.
Good luck
Sarah

Re: My projects: your advice would be appreciated.
 

Hi Sarah, thanks so much for your thoughts and encouragements.